Feeling shocked & bewildered

[rod44]

Ok my NS has left me feeling kinda shocked and bewildered

I was back with my him today. It was a very frustrating and disappointing visit and has left me shocked and very angry.....

My Story:
Following a number of MRI scans over the past few years I was DX with....
Borderline Chiari 4mm
Syrinx 7mm from C5 > T2
Congenital Neuroenteric Cyst at T1 (left side) with a split cord syndrome.
Congenital fused (block) vertebra in the cervical thoracic junction....

The NS has indicated that some of my neurological signs are more consistent with a benign upper motor neuron defect than due to any of my brain/spinal cord issues. He has only dealt with a patient with a Neuroenteric Cyst once in the past as they are quiet rare and by his own admission this was not a complete success....
He has said to me in the past he was unsure how to proceed, this is not much help to me though...

He has decided for now to monitor my condition. The reason he is doing this is and I quote “you are not disabled enough to warrant surgery”  I asked hm for his definition of disabled and his response was “when you are walking into a room and one foot will but the other wants to go somewhere else or you are falling over a speck of dust on the ground  then we will think about surgery”.....

I have been under the care of a urologist for bladder issues, he feels that this is due to my spinal cord issues, the NS when I asked him about it today said that it is very unlikely that this is the case as bowel and bladder issues usualey present in the latter stages of the illness....I have had many tests done and the urologist cant find any other likely cause of my bladder issues....

I see the NS again in six months

or

when I am more disabled........ witch ever comes first


Ray

[rod44]

Hi Barb, It is very easy to become disillusioned with the whole medical profession when you have an experience like this.
I have very obvious involuntary muscle twitching ( fasciculation ) in my lower and upper limbs, abnormal Nerve Conduction test, positive Babinski sign and no deep tendon reflexes. The NS  agrees that this indicates degeneration of the Central Nervous System. Taking these findings along with  the MRI findings you don't have to be a Brain Surgeon to know that there is a problem, the question that the NS cant or is not willing to answer is if my condition continues to degenerate is the degeneration revertible or permanent and yet he is prepared to wait until I have significant disability before he will do anything. I find this baffling.

[mikeysmom1995]

hey Ray,

so sorry you are dealing with all of this. It is bad enough to feel like crud, but dealing with these incompetant ******** makes you feel like you are spinning your wheels.
My older boy with tethered cord, his bladder/bowel issues were certainly a smack you in the face symptom.OMG!!!!!!!!!
I think that once these guys finish med school they think they are educated for life. Well guess what, a good doc is always learning, always looking for a way to help their patients. This is unfortunately few and far between.
I will pray that this quest for a new doc goes quickly for you so you can get on the right road to feeling better.
Barb :)

[rod44]

Thanks Trica, I am going to try and find a new NS but it will mean going outside the country I think as the odds of finding an NS with experience of my condition are slim....

[tlongbook]

I think I saw your NS's twin. I got the same message from the first NS that I visited. He told me to come back when I was paralyzed, then it would warrent surgery. I left that office and never went back.
I pray that you will find a good NS...it makes all the difference in the world.
I'm so sorry that you are going through this, it's scary enough without extra junk.
XOXO
Tricia

[shanmomof3]

Ray i'm SO SORRY you had to deal with that! Just keep pushing! I completely agree with what you and Selma have said i just wanted you to know i was thinking of you! (((HUGS))) Shannon

[*Stormy*]

Definitely a god complex....I have seen many of those..

Rod I'm sorry that it is so difficult to find a good NS where you live..I can sort of relate, there are not many where I am either but it is better odds...

I'm just so lucky that I found that one in a million, it was truly fate and nothing else.

I'm glad that we can at least help you with something even if it's just a shoulder! :)

[selmaS]

Stacey ...u r welcome...no worries...u r part of teh chiari family here...no need to feel alone...bcuz  ur not : )

[Spaceystac]

Thank you for sharing your experiences. And thank you for just being there. It helped to know especially today that I am not alone in all of this.

[selmaS]

All I can say is AMEN.

[rod44]

Indeed selma I am in total agreement with you on that....anyone doctor or otherwise who underestimates Chiari or who thinks Chiari and its many related conditions are straight forward is making one hell of a big mistake. It seems to me that doctors need to get off their high horses and  remember the reason they decided to become doctors in the first place, just because someone dose not meet the textbook criteria for a 100% DX  is not sufficient reason to dismiss them as being neurotic witch is something that many with Chiari experience or as in my case if a doctor dose not know how to treat a patient why not send them to one who dose know, is it their god complex I wonder?
As patients we have a duty I think to learn as much as we can about our illness and when that illness is a rare condition such as Chiari and Syringomyelia then we need to do what we can to raze awareness of it for people who are just getting diagnosed.
I can say in all honesty that without the wonderful support of people on here I would be lost and very alone, my family are wonderful but as the saying goes you don't understand someone until you walk a mile in their shoes

Ray

[selmaS]

Well Ray,

We r learning and have the ability to pass it on to the ones that come after us....so, by learning how to handle it all u will be able to help others...one positive.

Other hand, it is all very frustrating, and would be wonderful if we had a simple plan of attack we could follow.

I pray u can get the answers easy and get to the right drs just as well.

"selma"

[rod44]

Yes as far as I know health care is free for EU citizens traveling within the EU but I am not sure if this includes traveling for the purposes of getting specialized treatment or if  the Government will pay  for travel, accommodation etc or if I can get my medical records MRI's etc. I need to check all this out....as if I did not have enough in my hands lol

Ray

[selmaS]

HI Ray,
But u can go elsewhere in the UK...will they help u find a NS that is well informed and experienced  with ur issues?

[rod44]

Sadly I think it all comes down to politics and money. Risk V Litigation....

If the surgery caries high risk then the Doctors are slow to act out of fear of litigation, patient care comes in a poor third unfortunately  

Ray

[rod44]

I don't live in the US, I live in Ireland, we have a population of 5 million people and about 9 Neurosurgeons so the chances of finding one with experience of my condition are slim.....

Ray

[*Stormy*]

Ridiculous...all of it...Rod, Spaceystac..I just can't believe the attitude!! Why would any doctor want to leave something that they know is causing your symptoms until it is too late and the damage is done??? I just can't understand it for the life of me, these people are supposed to be here to HELP us. I don't know what I can say that hasn't already been said other than to keep fighting to get the care you deserve!! There are better doctors out there and I know it's hard to find them but unfortunately, it is left up to us to do so.
Rod- by the time they did my surgery, both my legs were going in opposite directions and the BS and stalling that I went through is why it got to that stage...finally found a GOOD NS and my surgery was done within 2 months of me deciding to do it. I really pray that you find a better NS! It sounds like you have the will and determination! Sometimes I wonder if some of them just aren't confident in their own abilities to help us..

[Spaceystac]

I had an evaluation today for insurance through the state. It was with a doctor that I have seen previously, and was not very nice in the past. She came in the room and said "so now you need to tell me in your own work, why you think you can't work" I started to tell her about how my head hurts every time I bend over and I get dizzy, then suddenly was interrupted by a knock on the door. She told me that she had to see another patient that was REALLY SICK and to make myself at home but it wont take long.
  I sat  there and thought to myself while she was gone. So this other person is sicker than me, enought so that you have to stop a STATE evaluation to help them not me.  
She came back in, it didnt really seem that she had been gone all that long. She said " We only have 12 minutes left but it wont take that long"  Needless to say she was rushing through my neurological exam and seemed kinda pissy when she couldnt get my right arm to even move when testing its reflexes. My left arm barely moved and she went back to the right arm and continued hitting it with her little orange hammer until it finally moved a little. But my leg reflexes were over reactive.

I am going to tell my case worker about this experience.  I didnt have time for coffee this morning so my head was and has been pounding. I was noticing that my vision has been throbbing like a blood vessel, I told her about that and she said people get that when they have migranes.    Im am at the point were I am ready to go to the hospital because I am constantly in so much pain. What is the breaking point, where you decide enough is enough to go to the hospital to seek treatment. Maybe my judgement is just impaired.

[zygy]

I just left a wonderful hospital that I live close to (Dartmouth Hitchcock Medical Center) because I was unable to get someone to listen!  I went to NY because their name was on the "list" and it was a wonderful experience.  I think we really need to find the doctors that we know will listen to us and these types of problems!  I am amazed that everything you read about Chiari says that it is preventative surgery but they don't want to do it until things are crazy... it just does not add up!  I wish you luck, I know how much screaming I did along the way while trying to find someone who would listen and understand!  

[rod44]

Thanks Selma, unfortunately my not being able to work, drive and do many other activity that would help to improve my quality of life was very low on my his list of priority's today. I am going to look at getting a second opinion, if this means traveling out side the state then so be it. There is provision for such trips as far as I am aware in our health laws for people with rare disorders to find suitably qualified doctors....  
Will keep you updated on how things progress.

Thanks for your continued support and kindness.

Ray

[cyberpyxi]

That is unbelievable! I'm outraged FOR you. I'm with Selma, it seems like he's waiting until the damage is permanent, and irreversible. Are you unable to see someone else? I know many insurance companies will allow a second opinion. Are you able to do this?

[selmaS]

Ray,

How does this impact ur unemployment statis?

I know how very upset u r and I am also very upset for u...this does not make sense.Y would a dr want u to have more issues as the more u get the more likely u may not have a full recovery....and by full I mean with out perm damage.

We all know the issues that face us this all being a neuro  one.....I wish u had an opportunity to select the drs u see. Even for those of us able to do so, have a difficult time finding a dr to help us.

Know I am praying that this dr gets info and the ability to see how he can offer u some help.

"selma"